With most illnesses, we don’t have much of a problem believing the diagnosis we are given. Say you have a sore throat and a fever. You go to the doctor, where you are examined and given a throat culture. The doctor tells you that the rapid test for strep is positive, writes a prescription for antibiotics, tells you what to do to get better, what to expect, and when to call if things are not improving. What you are told fits with what you are experiencing.
Now let’s compare that to what happens to a patient with Functional Neurological Disorder. To start with, most of us have never heard of this disorder so we aren’t expecting to hear that diagnosis. We expect to be given a diagnosis that we have at least heard about.
The next problem is that there is no definitive laboratory test for FND. We don’t get a blood test that identifies what we have. Frustratingly, the opposite is true. Every test we get comes back normal. How can that be when so much is going wrong with our bodies?
Most of the time, a doctor has no problem telling you what is wrong when you are struggling with an illness. With Functional Neurological Disorder, for some reason most doctors are unable to provide the diagnosis in a straightforward manner. Some aren’t even able to tell you the name of the problem, but may tell you instead what you DON’T have. How helpful is that? If you are told the name of the illness, it’s not likely that you will receive a convincing explanation for the diagnosis, much less information about the cause of the disorder or your prognosis.
We usually go to the doctor when we have a medical problem because we want to understand what is going wrong with us and how to get better. Even if you are incredibly fortunate and receive a straightforward diagnosis of Functional Neurological Disorder, obtaining information about the disorder and a treatment plan almost never happens. Most neurologists believe that it is solely a psychiatric disorder and that all they need to do is tell you to get psychotherapy. Right away, your defenses go up. You KNOW something is drastically wrong and that you are being brushed off by your doctor. You feel misunderstood, disbelieved, dismissed, and abandoned.
In defense of your doctor, he or she is also human. We only know what we are taught, and what most doctors are taught about FND is nothing. We all like to feel knowledgeable and competent. Currently, there are very few physicians who are familiar with FND and feel comfortable with its diagnosis and treatment. Most likely, the doctor who first saw you with your FND symptoms was not one of those physicians. We pick up on the doctor’s discomfort, which makes us also uncomfortable and not confident at all in what we are told. Obviously this doctor has no idea what is wrong with us, so we continue on our search for someone who can help us. Good luck with that in our current medical system!
Hopefully this situation is changing. There are some neurologists now who are interested in the disorder and are teaching others how to diagnose and treat it competently. As patients, we deserve thoughtful, compassionate care.
I dream of a day when most people have heard of FND and most doctors are knowledgeable about its diagnosis and treatment. Accepting the diagnosis would be so much easier if that were the case, and that acceptance is the first step to getting better.
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